Mighty of spirit

Our little man Brahm blasted through all the stereotypes,

 and statements anyone ever made of his tiny little self.

Our 32 POUND

Six year old

WON ~ 4th in the Colorado state wrestling competition Saturday

and WON ~ 2nd in the rookie division!!

Dude had some fierce competition - 

wrestling a full bracket of kids

 6 years or younger and under 37 lbs!

Little studmuffin weighing in at a whopping 32 lbs

Loving his huge 4th place trophy!

We were there for 2 days - it was ridiculously long

Waiting for their turn

Brahm has the headgear on top!

Big brother coaching him!

Losing was hard but little man fought against kids 37 

and even heavier on Sunday as that weight level was increased to 39 lbs. 

 He did cry but it was a great lesson for him too.

I was proud he even went out against much heavier kids and did his best!

And I am most proud of this ~ our community.  

Because who really cares if a scrawny little six year old wins or not?

I look in this crowd and see face after face of our village cheering on our little man (and holding Tao LOL).  They cheered, high fived and made him feel like a true champion.

I don't know how long he will be able to wrestle,

or even walk.

But I know that this picture will be one I pull out in the years to come and show him,

HIS village cares and loves him, 

FOR HIS HEART!

***************************************************************************

And this one ~

Besides carrying Brahm, and coaching him, (and eating all our food LOL)

He had his time to shine ~

No headgear with green shoes

He did NOT place, coming in 7th 

BUT

He fought HARD!

He went toe to with his mental nemesis

AND

He finally learned to lose with grace.

I couldn't be prouder for both my boys,

and my littles who joined us,

and the ones who stayed home, 

AND Cav who came for Sunday and did NOT freak out in the crowd!

Hebrews 12:1

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,

HEart of adoption

Yesterday was the culmination of our journey to Tao.

You see I was so afraid of his HEART that I spent endless days questioning God.  Heehee even typing those words makes me laugh now.

Every consult we received while waiting the 6 weeks for an update (before finally sending LOI) was that Tao had six fingered dwarfism (EVC).  I can do short, I can do extra fingers and the required amputation BUT Hearts - I don't do Hearts God - you know even in nursing school I didn't do hearts.

You may ask why were we so concerned about his heart?

Well, for kids with EVC almost all of the kids show up with some form of Atrial (top part of the heart) defect.  From a hole to a single atrium.  FIFTY percent of the children with EVC die within the first year!  Tao's referral was made at 6 months and he was turning 2.  When we sent LOI (before the update ever came) we didn't even know if he was still alive.  We took that humungeous leap of faith because we were out of time.

THe update came after we got PA (dated before we ever sent LOI) he was alive BUT had not been to the Dr since his original file was done.

Can I tell you how many nights I allowed Satan to whisper his hateful words of doubt during our wait.  We knew he had a PFO but that's not really a heart problem - where was the Atrial defect - how severe was it?

(Now let me tell you I consulted many of the dwarf specialists and they all concluded that he had to have EVC - one who I sent the x-ray findings before the information about his extra fingers said he had a "greater than 50% chance that maybe he was the only known child with achondroplasia (like Fei) and extra thumbs."

The statement was our hope no matter how small.  But again I allowed Satan to whisper - you see Brahm is a 1 in a million - can a family really have 2?

I brought my stethascope, & my hope to China he seemed perfect but again hearts are hard for me - was I missing something?

Yesterday we met with the cardiologist, 

HE was LESS than amused LOL!

we had an EKG, 

a full Echo 

and . . . yep we have 

another 1 in a million kid LOL!  

I rejoiced but over the past 24 hours as 2 very dear little girls fight for their very lives I looked at their parents and I felt shame.  

REally, who am I to tell GOD 

that I couldn't 

or more importantly wouldn't 

do HIS work 

because I was afraid.  

Please will you pray for the families below THEY were NOT afraid, they followed God in a way I personally couldn't.  I stand in awe of these families and we have been lucky enough to meet many more of these families along our adoption journeys.

IVY ~ is only a week older then Tao

LILY ~ sweet girl has been in the hospital 7 weeks

Dwarfism awareness ~ size

Brahm is one of our 3 birth children.

His daddy is huge (as in 6'3" and 250 lbs (sorry honey!))

Brahm's big brother and sister are going to be big also!

As in his brother will be over 6 feet and his sister close to 6 feet LOL!

80% of children born with dwarfism

 are born to parents who are average height (AH)

which also makes me laugh because my husband is far from average height LOL!

This also means that FeiFei and Griffen's parents were also more than likely average height.

Now that our children have the gene mutation for dwarfism they will have a higher chance of having children with dwarfism, but they could also have children who are average height.

If they marry another person with dwarfism they will have 

25% chance of average height

50% chance of having a child with dwarfism

25% chance that their baby will die shortly after birth 

(due to receiving both dwarfism genes)

Also, there are varying sizes of people with dwarfism 

just like in the general population.

Because of his dad, Brahm will probably be a bigger dwarf then others with his type. 

FeiFei and Griffen may be smaller due to their Chinese genetics but we will see.

Dwarfism Awareness - Types

Did you know their are over 300 types of dwarfism!

However, the majority of all people with dwarfism have achondroplasia

This is what type of dwarfism FeiFei has.

Her arms and legs are short but her torso is actually about normal length. 

 So she is much smaller than her peers until she sits down, then she is right on level with them!!

We THINK (after so many genetic tests we have lost count) that Brahm has 

Multiple Epiphyseal Dysplasia

It means he is much more proportionate than FeiFei

Although his head is large from front to back.

On his growth charts, his head has always been 50% 

and his height and weight are way below 3% (the bottom line)

Also his hip and knee joints are different.

They are supposed to look like 1/2 a basketball

Brahm's are short and jagged which causes him his pain.

Griffen, well his type of dwarfism is still up in the air.

We think he looks like he has achondroplasia BUT he has his extra thumbs,

AND there is a type called EVC or six fingered dwarfism LOL!

So we will see when we get our hands on that darling little angel!

Dwarfism Awareness Month ~ never apologize

October is Dwarfism Awareness Month - 

I will be posting thoughts, information about dwarfism this month!

We WON!!  Ok I can't hardly contain myself, we won the Sunday snapshot here!!

To me this single picture reminds me so much of the face of dwarfism - tiny but mighty!

I kind have shared our story a little here, but I don't think I have shared how I felt.  I cried, in fact for months I would cry.  Everytime, I saw babies born at the same time, doing something normal I would cry.  I felt like we did something wrong to cause this.  This baby who we had 1/4 of 1% chance of getting pregnant with.  The baby who we prayed for, for years and were in the process of saving for IVF.  Our son who was a miracle in our eyes, conceived naturally against all odds.  Had I somehow caused our son to be born when God knew the heartache he would have?  What would his life be like, my poor disabled son - I say that very tongue in cheek because now I can absolutely laugh at it!

Somewhere along the way we went from protecting and sheltering him, to treating him like one of the kids.  We fell in love with his unique look, his big eyes and his happy disposition!

To us he was jsut our darling baby, but man when we went out it was a circus.  I don't fault people at all, especially when he began to walk.  I would jsut pray that we could get through the grocery store without being stopped.  But invariably, our trips would take twice as long.  I slowly learned to be an advocate and educater.  

Now imagine a perfectly miniature little boy running around amongst the shoppers.  And when I say miniature I mean miniature!  These are what he wore when he was potty trained!!

Do you recognize them?

Yep Build a Bear undies, (momma sewed the back shut LOL!)

I quickly learned who was actually interested in dwarfism, and who jsut wanted to exploit our family.  I learned that some people are jsut morons, I learned that others loved our son as he was.  BUT I also learned the biggest stab in my heart came from those that felt sorry.  The ones who profusely apologized for our son - really, he is the biggest blessing of our life!

If I could tell anyone anything - it is to NEVER apologize to a mother for her child!

Every child is beautiful, they are a gift from God and they are made in His image.  Please, I beg you to look at any child and find one beautiful thing about them.  

Whisperings of his soul.

 AS I sit here not doing the thousand things I NEED to do before I go get Griffen, I decided to edit pics from the weekend.

The more I looked at these pictures the more I got teary eyed.
How can I possibly sit here feeling sorry for myself
for the craziness of the past week, month, summer.

My boy, you know the one with the 'disability'
doesn't feel sorry for himself
but accepts the life that he was given
with so much heart and zest for life.

It won't take long to figure out which one Brahm is in the pictures below,
and then I hope you see his 'go get em' personality.
We don't know how long he will get to play
because of his deteriorating joints and chronic pain.
So we let him play for now.

My boy with a heart for sports,

we must weigh the whisperings of his soul

with preserving his body.

You can't put a limit on anything.

 The more you dream, the farther you get. 
Michael Phelps 

SUnday Snapshot {florabella}

I bit the bullet and had to buy Florabella Colorplay! (they had a coupon on their FB page!!)

I have held off on buying much of everything for a long time . . . cuz you know 3 adoptions in 1 year and so many friends also adopting and in need.

BUT, I also know my soul and I jsut don't have the time to fiddle with photographs like I did before.

So I purchased, and while I cuddled with Fei as she recuperated I went through my file of most favorite but never edited pics.

I came across the one below taken when Brahm got a black eye!

But truly it speaks to me how he takes on the world.  Despite being the size of a 2-3 year old (he has dwarfism & is 6) he played lacrosse against kids up to 9 years old today.  He is an inspiration to everyone watching.  

Photo specifics ~

Besides the fact that his hair and eyes are the SAME color, 

his eyes truly speak to the soul (or maybe just mine!)

Canon 5d

50mm lens*

Florabella Colorplay Recipe ~ 

Perfect color

Organic 58%

Ethereal 5%

Dramarama 65%

** If you look at his picture, since I used the 50mm lens his focal plane is very shallow.  Because of Brahm's particular type of dwarfism, his head is long from front to back.  You can totally see in this picture how blurred the 'forehead' area is.

Backpacks for littles!

It was time for this little guy to go on a date with his momma - he has had the largest impact from the adoption - going from the baby to the middle.

He was so excited he did his hair, put on a collared shirt AND wore socks!!

We went to his favorite - Elephant Bar!

He was so sweet and even opened the door and determined that holding hands was not for a date so he crooked his arm for me to hold onto just like daddy does - gotta love this kid!

Anyhow, after we were done with dinner AND the dollar store (gotta love a cheap date)

we stopped at the store looking for backpacks.

Let me tell you - dwarfs and backpacks don't usually go together well.

Now mind you my little man doesn't even weigh 30 lbs,

going into 1st grade.

Then I remembered that pottery barn had tiny full-size backpacks last year 

so off we went

cuz the ones were trying on made it look like the backpack had shoes LOL!

SCORE!!

 this had to be the best backpack we have ever found for him!

AND the lunchbox clips on the front (ok I realize he is as tall as wide but still!)

Wearing it lose which he likes but I know his pain Dr would have a fit!

Tightened up and looking pretty cool!

As I have said many times having a little person really shouldn't be a special need, it takes just a little shopping and thinking outside the box

 (and might be just a little more expensive as I normally get backpacks form Ross LOL!)

SUnday Snapshot - Easter

It was a great Easter.  Not just because we were able to celebrate His resurrection with our new children.  But because I was able to get atleast ONE good picture of tall 5 kiddos that I LOVE!!

I am a bit of a freak.

I have always dressed them for Easter and usually pick three colors to work around.

Pink, white and tan were this years colors.

We found the girls outfits right after we got home from China.  Little man picked the little boys outfits and we got our big boys to coordinate.

These were taken this morning BEFORE church  -
heehee the sermon was basically on the craziness of our lives -
probably NOT the best timing, but I couldn't be more thrilled that they were
still CLEAN,
slightly pressed looking,
and excited enough they cooperated with me. . . some!

AN out take but LOVE little man's toothless grin so maybe a head swap is in order!

Love this picture of my girls - 

I can believe how much Morgan has changed and also a bit scared ~ she is TEN!

My little stinkers!

My favorite question when photographing is "WHO FARTED!" heehee

 I of course don't have all the info but I shoot mostly with a Canon and this was with my 50mm lens.  I have been fiddling in Lightroom for post processing.  Loving this different etheral look.

Not to look at the 500 other pics to see if their are some other keepers!

Adopting children with dwarfism

First let me begin by saying that I could really adopt 12 of FeiFei, she is delightful, sweet and so happy. She has felt like she has been a member of our family for years instead of not quite a month.

 Dwarfism is such a DO ABLE special need.

 There are currently over 24 children with dwarfism needing homes RIGHT NOW!

 I ask that you look into your heart and question how much does size make a difference!

 As the parent of two children with dwarfism I can tell you that the famous saying women love "Fabulous things come in small packages" holds true for these guys too!

 THey have all of the spunk, love and energy they just are a tad bit smaller.

  In addition, the very unique part of adopting a child with dwarfism is that you KNOW!

 Most times you can guess on the type of dwarfism the child has (although most will have achondroplasia like FeiFei.) You know how bowed their legs are, if they are walking, if they are having numbness or tingling which could indicate spinal issues.

 Frankly the scariest time as a parent of a child with dwarfism is prenatally and the first year.  And although as much as I hate to say it, it appears that adoption and dwarfism is truly a case of survival of the fittest.

 Did you know that children with dwarfism are considered a BAD OMEN in most countries. After traveling in China I finally understand why. THe subway and most of the specialty things charge based upon height. My children with dwarfism may never meet the pay price even as adults, and in a culture which values paying your way, people with dwarfism are given a bad image due to no fault of their own.

Our day to day is figuring out the basics -
 can they get in this chair - oh wait that one has a bar they can step on.
 a step stool in the car allows her to get into her carseat
 oops those pants are to long, but these capris are jsut perfect and so are the leggings.

 I would say that self image can be an issue and mind you our children with dwarfism are only 4 & 5 but if you asked the kids in our sons classroom they would tell you that little man is their favorite friend.

I chuckled today when I saw the two of them surrounded by 8 other kids at the playground.

THey might be little but they are mighty.

 In addition, their is a phenomenal yahoo group of parents who will answer your questions along the way. THe LPA is incredible, and BTDT parents have layed out everything from IEP information to area specialists.

 Does FeiFei have a large head, tiny fat fingers, and short little legs. 

YEP! 

But she also has an award winning smile, and a whole lot of sass! 

 If you are thinking of adopting would you please consider looking at one of these children.

The Great Kindergarten Bus Adventure

I often get asked what accomodations we make for little man's dwarfism.  Entering Kindergarten has really brought his need for accomodations to the fore front.  We have had to coordinate with his teacher, physical therapists and his Doctors.  We are still working on the 504 etc.  Regardless, most of his accomodations at school have more to due with his joints and chronic pain than with the short stature of his dwarfism.  That being said today was a hallmark day!

Our kids go to a K-12 school!  It's very cool and new!  The best part of this is that our big boy (7th grade) starts school at the same time as the elementary kids, so K-8 ride the same bus.  I am sure there have to be other kids on this earth that LOVE the bus as much as mine.  SO little man has been waiting years to be able to join the big kids on the bus.  There is jsut no way he would tolerate being on a different (ie short bus.)  Besides the regular bus stops at the end of our driveway . . . oh and school is only a mile down the road.  But still it's the BUS!!  We realized mid last year that this could potentially be a huge problem as he wouldn't be anywhere the 35 lb weight limit.  Luckily, our school district is amazing, and they were willing to work with us on his size.

So today we went over to the bus barn (heehee school starts Monday and they wanted to give him the most amount of time to grow LOL!).  I have been having nightmares that he would never be able to manage the huge first step.  Some school districts have required children with dwarfism to be able to step up on the bus themselves or they couldn't ride.  So even having our big boy there wouldn't help.

I was beyond thrilled that they have us scheduled for a regular bus that has steps closer to the ground (not the gigantic ones).  Little man did NOT have a single problem getting onto that bus!  One hurdle down now onto his weight.

Since we jsut had our huge Dr's appointment I knew he was still only 27 lbs.  Our fabulous district has outfitted the bus with integrated child seats.  THey are 5 point seat belt harnesses which are built right into the seat (caravan's once featured them.)  Little man was able to get up into the seat and close his seatbelt like a big boy!

Best of all the pull down gives him jsut a little bit extra boost.  His hands are still not strong enough to undo the seat belt so either the bus driver or my sweet 7th grader will (or his adoring public - our big boy's friends!!)

I know this doesn't seem like a huge deal to most.  But for us, it is one less disappointment we have to deal with.  For little man it's a step to independence and for mommy, I am a little worried how I am going to do sending my sweet angel off to school!

Postcards from Holland

I was thrilled to find the entry of Postcards from Holland on the blog below. It has been a very interesting time of reflection. Not only did we lose our beloved social worker (previous post) but our little man will be five . . . YES 5 next week! We found out about his dwarfism 5 hours before he was born. Welcome to Holland has been a fabulous poem for us. Now five years later I still sometimes feel the heartache of his diagnosis, especially on his painful days. But how much have we grown, as a mom, as a family. Most importantly, without his diagnosis, we would NEVER have found us on the journey to our other 2 children.

If 5 years ago today - while I was still pregnant with all 5lb 11 oz of him, that THIS was where our journey would take us, I would have laughed. In addition, our relationship with God is SOOO much stronger and brighter. It is amazing and we feel so blessed, all due to a tiny little one born to us the beginning of August.


Postcards from Holland

It has been a fabulous ride!